We lost another man. Thanks pink charities.

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Traveltext
Traveltext Member Posts: 2,089
edited May 2018 in Male Breast Cancer

Another member of the Male Breast Cancer Cialition has passed away:

http://malebreastcancercoalition.org/Survivor Stories/michael-selsman/

This is a sad day. My condolences to his family.

The pink charities should accept that they are very much to blame for Michael's death, since they, by and large, keep men in the dark about this disease. Michael knew this when he said:

"The toughest thing was that I was diagnosed pretty late," he says. "If I'd been a woman, I'd have been more aware of the risk factors and family history, and that I was a candidate for breast cancer."

We all need to do more to bring about change in the ways the pink charities present breast cancer to society. I mean, how successful are breast cancer awareness campaigns when under half the population don't know that men get this disease too? Our diagnosis is later, and our prognosis is poorer. We're literallydying for change.

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Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2018

    Traveltxt,

    So sorry to hear this; condolences to the family as well.

    I gave a keynote speech as the faculty advisor of our local American Cancer Society's university fund raiser--Relay for Life--last April and in it (speaking to about 700 students and a few faculty) I emphasized that it wasn't simply a female problem, and that men should do self-exams regularly like we do. I hope I perhaps helped a few.

    To lose one person to b.c. male or female is one too many.

    Claire in AZ

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2018

    Traveltext, I'm so sorry. My condolences to his family.

    And you are absolutely right. The 'pink charity' industry (and it has become an industry) needs an all round shake up. In the way they present breast cancer, most of the pink charities do a disservice to women, who aren't told the truth about BC, and to men, who aren't even addressed or told that they can develop BC.

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited February 2018

    I'm sorry, Traveltext. What a sad day. And I agree with you completely.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited February 2018

    Sorry to hear about Michael. I appreciate your reminders that breast cancer takes a toll on men, and that they, too must remain vigilant.

  • wrenn
    wrenn Member Posts: 2,707
    edited February 2018
  • Traveltext
    Traveltext Member Posts: 2,089
    edited February 2018

    Thanks, I've always found women here very supportive and certainly well aware that BC is genderless. And also very understanding about the negative aspects of all the pink hoopla around the way this disease is presented for fundraising purposes.

    Last week BCO member, Cliff, died. Like Michael, he was diagnosed Stage IV from the get-go due to the common delays men have in getting the medical profession to assume when they present with breast lumps, they may have breast cancer. it took me three visits over three months before I was sent for an ultrasound which found IBC, a Stage III cancer.


  • IntegraGirl
    IntegraGirl Member Posts: 147
    edited February 2018

    I’m very sorry to hear about Michael’s death :(. The “pink charities” do a massive disservice to men. I also think they do a disservice to women by minimizing the effects and risk involved with breast cancer and the multitude of forms it can take

  • Traveltext
    Traveltext Member Posts: 2,089
    edited February 2018

    Yes, IngegraGirl, it seems to me that the message is, get checked, then get better. And yes, at last count there are nearly a dozen variations of this disease and that is not being conveyed. I think the complexity of the situation makes delivering the multiple aspects (including gender) a difficult proposition, but to give up and just go for the pink party approach is scandelous. And the "help us fund more awareness and more medical research so we can find a cure" is disingenuous, simplistic, and a con.


  • NotBrokenJustBent
    NotBrokenJustBent Member Posts: 394
    edited February 2018

    How tragic and my condolences to family and friends.

    It was not until my dx almost 5 years ago that I first heard that males can get BC too. I recently asked my millennium sons if they knew this and neither one did so evidently word is not getting out. Even after having BC myself I have little understanding of this. Are all men at risk or primarily only those genetic predisposed. Do they recommend that all men do self exams?

  • Traveltext
    Traveltext Member Posts: 2,089
    edited February 2018

    Men with a genetic predisposition to the disease have a one-in-eight chance of getting bc in their lifetime, the same as all women regardless of their genetic potential. It should also be remembered that men pass on their genes equally to women and therefore a man's history of familial bc becomes an issue. While all men don't need to be part of the public screening process, certainly the genetically predisposed should be. And as far as checking for breast lumps, they're not hard to find for most guys, so go get them checked if they are persistent and the size isprogressive.

    Men don't expect a disproportionate amount of publicity, since we're just one percent of total new diagnoses. But it shouldn't be beyond the skills of a good publicity team to put a small bit of blue in the pink, enough for people to think, hmmm, what's that for? And degender the text around this disease, replace "women" with "people" like a charity in my country did recently.


  • illimae
    illimae Member Posts: 5,710
    edited February 2018

    I agree traveltext and I’m sorry for the loss. While my genetic testing was negative for known mutations, my mother and maternal aunt were dxd before me (at 41), my brother and I were discussing the BC family history. He mentioned the good fortune of having sons not daughters and was shocked to learn BC isn’t just for the ladies.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited February 2018

    illimae, you've made a good point and good on you for enlightening your brother.

    Here's the rub. I have kids in their 40s. While my daughter, with two generations of bc before her ,gets put into an excellent public screening program (includes an MRI), my son is left to look after himself.


  • ksusan
    ksusan Member Posts: 4,505
    edited February 2018

    Rotten news. I'm sorry. When I do BC education and training, I make sure to let my audience know the rates and particular concerns for men.

  • Micmel
    Micmel Member Posts: 9,450
    edited February 2018

    I am so very sorry to hear this. There really are no words to express how badly we need some attention and more informative educational ways for men to learn about the risks, and be able to be taken very seriously when their concerns are expressed. I didn’t have any breast cancer in my family either. But they didn’t even say “oh hey, watch yourself as you age” to my son. .... but to my daughter they had specifics. What age she should start having mammograms and look for this that and the other things. No one took the time at all to talk to my son or tell him anything!! It hit me when I read your posting. No one said a word to him. That infuriates me completely right at this moment. You make a very good point. There is not enough pushing or mention at all for male breast cancer, and that’s just NOT ok, not here in the US, not anywhere in 2018? Come on people! I truly am sorry for the losses...😞💔 much concern ~M~

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2018

    Traveltext - Forgive my ignorance - how do they generally screen men? Can they get enough tissue with a mammogram?

  • Meow13
    Meow13 Member Posts: 4,859
    edited February 2018

    Traveltext, I was thinking of you, the other day on a tv ad here in the Seatlle area they had a man diagnosed with metastatic breast cancer. I hope the message goes out to others that men can and do get the disease.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited February 2018

    farmerlucy, believe or not we get mammograms if necessary (I call them manograms). But I go for ultrasounds, since they are no fuss, no radiation and perfect for the male anatomy.


  • Traveltext
    Traveltext Member Posts: 2,089
    edited February 2018

    KB870, Good to hear male bc was being raised then. I think attitudes are changing and, slowly, men are realising they are responsible for their own health. But, with bc, that's generally just off the radar unless they are really paying attention.


  • Snickersmom
    Snickersmom Member Posts: 926
    edited February 2018

    I'm so sorry to hear of this loss. I lost my brother to breast cancer 3 years ago. They believe his was directly related to all of the Agent Orange he was exposed to in Vietnam. Always very sad to lose someone to this horrible disease,no matter the gender.


  • Meow13
    Meow13 Member Posts: 4,859
    edited February 2018

    snickers, I was exposed to agent orange as a child. My dad worked for the forest service and used it to de-foliage trees in experiments. Do they really think it could be linked to breast cancer years later?

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited February 2018

    So sorry to hear of the passing of Michael and Cliff.

    Decades ago, children’s picture books in the USA showed illustrations of children of European descent only. Eventually the pictures changed and we started to see children of various ethnic backgrounds represented. Would it be so hard for those who make publicity and educational materials about breast cancer to show some men along with the women? It seems so simple, but it could help change things, in my opinion. Just as saying “people” instead of “women”.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited February 2018

    snickers and meow, certainly chemicals are linked to many cancers. Here is a link to the Camp Lejeune water study shows a potential connection between ground water chemicals and male breast cancer.

    http://www.jdnews.com/article/20150923/NEWS/150929...


  • Micmel
    Micmel Member Posts: 9,450
    edited February 2018

    My best friends grandfather is one of the survivors associated with that story. He has had a mastectomy and has had breast cancer, many have died. There are some that are still alive and fighting! She's shown me pictures and we have talked about this many many times! It's really such a shame what these men have gone through. But they are striving to be a strong voice to put it out there what happened! There is actually a calendar circulating with them all standing together and a man represents each month. She has shown it to me, it's very touching and so surreal....they all did for awareness!

    ~M~

  • Traveltext
    Traveltext Member Posts: 2,089
    edited February 2018

    Micmel, yes that's a terrible story. I think we don't know the answers to the effects of many chemicals, and that's a big worry for us all.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2018

    Traveltext - My thoughts are with Michael's family - and with Cliff's. Less pink & more inclusive education!!!

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited March 2018

    I'm sorry, Traveltext. It's a tragedy to lose a good one, man or woman, to this disease. And yes, we must educate men that they have breasts and breasts can get cancer. When my husband found a lump in his breast years ago, neither he nor I knew what the heck it might be-- "do men get breast cancer?" we wondered. The mammogram experience was a little uncomfortable for him, and not just because of the big squeeze. The pink, frilly environs are a little off-putting for someone in a business suit and wingtips.

    This October, like every October now, I'll wear a light blue ribbon for the marginalized men in our club.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited March 2018

    Good on you sbelizabeth. And it's too bad that awareness that men get this disease too is so low. There's lots of funny stories I've heard from men who have to go for treatment. Yours are common, but so is the one where receptionist tries to tell you that the prostate clinic is down the hall.


  • Katiejane777
    Katiejane777 Member Posts: 109
    edited March 2018

    Im so sorry! When I was still at diagnostic stage my brother told me he had lots of cysts that were always nothing. I keep telling him (and my sister) to get regular checks because now they have a family history. :(

  • wallycat
    wallycat Member Posts: 3,227
    edited March 2018

    It is a shame you have hostility towards "pink charities" because I don't think the presumption is that it is an all female disease. Unfortunately, more women then men will get this ugly disease and if we want to turn it into a blame game, I would bet that if men were at higher risk, this disease may have already found a cure. I'll also add that I know enough men that even when they KNOW they have high risks for various diseases, simply refuse to go to the doctor....so it should NOT all be about pointing fingers and blaming. We should all remember that being human puts us at risk for disease.

    I am deeply saddened for those of us living with cancer and losing people to cancer...all types of cancer and all types of people. We are in the 21st century and the best some of us can hope for is amputation of our parts and hope we make it. I certainly hope that there will be a better treatment/dx in my lifetime. I'm nearing another cancerversary, so I am on edge and defensive and always nervous about recurrences...

    May this ugly disease become a dinosaur.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited March 2018

    wallycat, you are so correct that men are loathe to go to the doctor with their medical problems. But, what about if they have breast lumps and don't think it could be one of the world's most common cancers? And what about if they do go to their doctor and are told not to worry? And, worst of all, what about when they present at Stage IV, as men more commonly do?

    My main gripe about the pink charities is that they have banged on about early detection and awareness, but nearly always only in relation to women. Community rates of awareness that men get this disease too, languishes at around 30%. Now, I know we are only one in one hundred cases, but when that one percent is you or your mates then you have a reason to be angry.

    I believe men are by and large excluded from the breast cancer narrative because it interferes with fundraising efforts. We are an inconvenient truth and the pink dollar campaigns won't go as well with us in the story. If this isn't true, why would they not feature men much more regularly in their awareness campaigns? We're dying for a change to this situation, and I'll tone down when the discrimination stops.



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